Search the web
Sign In
New User? Sign Up
ptc · This is a mailing list for those who suffer from PTC. Family members, friends and loved ones are not only welcome but encourag
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Want to share photos of your group with the world? Add a group photo to Flickr.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

  Messages Help
Advanced
Hi I'm New Here   Topic List   < Prev Topic  |  Next Topic >
Summarize Messages Sort by Date  
#27968 From: "Keeper" <enformer@...>
Date: Thu May 1, 2008 3:06 pm
Subject: Hi I'm New Here
keeper_of_da...
Offline Offline
Send Email Send Email
 
Hello Everyone. This is my first time here. I found this group doing
a search for support groups.

I was looking for a place I can talk to people about PTC that
actually understand. Well I'll tell about myself. First I am from
Pennsylvania.

I was first diagnosed back in 2002. I started the medication
(Diamox), had multiple LPs done and went on a diet. In 2004 it went
into remission. In 2005 it came back. Not real bad like before but it
was back and I was very close to losing my vision because of the high
pressure on my optic nerves. The headaches were annoying but not to
bad. Now its 2008 and its acting out in rage. I've had a non-stop
headache for 2 1/2 weeks straight. I was put in the hospital because
nothing was making it go away. I had a spinal tap and it did go away
for about 6 hours before it came back with a passion. After a week
and a half in the hospital on morphine and dilaudid, I still had it,
so they decided to put in a VP shunt. That was last Friday. Now I'm
starting to get a headache again so I don't know if maybe its not
working or needs adjusted. I know its only been a week. I go back to
the neurosurgeon tomorrow to get these awful staples out my head and
stomach.

I'm starting to wonder if it was a good idea to get this shunt put
in? Besides the throbbing in my head where they cut it, I've been
headache free basically. But every now and then I feel a twinge like
its trying to tell me, its gonna come back. Anyone else here have the
VP shunt put in? And also, I've read stories on the net that said,
sometimes when going thru a store with those anti-theft alarms by the
door, that it can turn your shunt off.. is that true?

And one last thing to those that have had the shunt. Does your
stomach ever stop hurting from where they cut it at??

Thanks for everything.
Gina





#27969 From: sharon jenkins <jaguarshun@...>
Date: Fri May 2, 2008 12:25 am
Subject: RE: Hi I'm New Here
jaguarshun
Offline Offline
Send Email Send Email
 
Hi Gina, I have a vp shunt and i get those twinge pains all the time in my head ...Like at any minute I will be getting a headache. But I have had this shunt for about 12 yrs now and it was doing good. Until  an auto accident then I got the headaches and vomiting back I have always had blurred vision since the onset of ptc. and double vision sometimes thriple vision. Yes the pain in stomach will go away.  Hope this helped some


To: ptc@yahoogroups.com
From: enformer@...
Date: Thu, 1 May 2008 15:06:58 +0000
Subject: [ptc] Hi I'm New Here

Hello Everyone. This is my first time here. I found this group doing
a search for support groups.

I was looking for a place I can talk to people about PTC that
actually understand. Well I'll tell about myself. First I am from
Pennsylvania.

I was first diagnosed back in 2002. I started the medication
(Diamox), had multiple LPs done and went on a diet. In 2004 it went
into remission. In 2005 it came back. Not real bad like before but it
was back and I was very close to losing my vision because of the high
pressure on my optic nerves. The headaches were annoying but not to
bad. Now its 2008 and its acting out in rage. I've had a non-stop
headache for 2 1/2 weeks straight. I was put in the hospital because
nothing was making it go away. I had a spinal tap and it did go away
for about 6 hours before it came back with a passion. After a week
and a half in the hospital on morphine and dilaudid, I still had it,
so they decided to put in a VP shunt. That was last Friday. Now I'm
starting to get a headache again so I don't know if maybe its not
working or needs adjusted. I know its only been a week. I go back to
the neurosurgeon tomorrow to get these awful staples out my head and
stomach.

I'm starting to wonder if it was a good idea to get this shunt put
in? Besides the throbbing in my head where they cut it, I've been
headache free basically. But every now and then I feel a twinge like
its trying to tell me, its gonna come back. Anyone else here have the
VP shunt put in? And also, I've read stories on the net that said,
sometimes when going thru a store with those anti-theft alarms by the
door, that it can turn your shunt off.. is that true?

And one last thing to those that have had the shunt. Does your
stomach ever stop hurting from where they cut it at??

Thanks for everything.
Gina




Spell a grand slam in this game where word skill meets World Series. Get in the game.

#27970 From: Anji <anjihar@...>
Date: Fri May 2, 2008 2:53 pm
Subject: Re: Hi I'm New Here
anjihar
Offline Offline
Send Email Send Email
 

 
Hi Gina,  vp shunts are wonderful as long as they keep working.  Sounds like your having your "honeymoon" is over headache as I call it.  I've had 4 vp shunts and each time towards the 2nd week after surgery my head would really start hurting.  Doc said it was from numbness wearing off.  It should pass soon.  Give your body time to adjust and except the occasional twinge or so it shouldn't bother you too much.  Yes the belly pain will get better.  Try holding small pillow over the area as you walk if you need to.  Getting the staples out will go along way to making you feel better.
There are many different valves for vp shunts.  Some can accidently be reset but most now days hold up pretty well.  Be sure and ask your surgeon what could reset yours and you should receive a card to carry with you telling you exactly what type of valve your shunt has.  If you don't be sure and ask which one it is.   Hopefully in another week or 2 you will be mostly headache free.  Just remember it may need some tweeking on the setting of the valve as this is your first vp shunt.   Hang in there and good luck, Angie


----- Original Message ----
From: Keeper <enformer@...>
To: ptc@yahoogroups.com
Sent: Thursday, May 1, 2008 10:06:58 AM
Subject: [ptc] Hi I'm New Here

Hello Everyone. This is my first time here. I found this group doing
a search for support groups.

I was looking for a place I can talk to people about PTC that
actually understand. Well I'll tell about myself. First I am from
Pennsylvania.

I was first diagnosed back in 2002. I started the medication
(Diamox), had multiple LPs done and went on a diet. In 2004 it went
into remission. In 2005 it came back. Not real bad like before but it
was back and I was very close to losing my vision because of the high
pressure on my optic nerves. The headaches were annoying but not to
bad. Now its 2008 and its acting out in rage. I've had a non-stop
headache for 2 1/2 weeks straight. I was put in the hospital because
nothing was making it go away. I had a spinal tap and it did go away
for about 6 hours before it came back with a passion. After a week
and a half in the hospital on morphine and dilaudid, I still had it,
so they decided to put in a VP shunt. That was last Friday. Now I'm
starting to get a headache again so I don't know if maybe its not
working or needs adjusted. I know its only been a week. I go back to
the neurosurgeon tomorrow to get these awful staples out my head and
stomach.

I'm starting to wonder if it was a good idea to get this shunt put
in? Besides the throbbing in my head where they cut it, I've been
headache free basically. But every now and then I feel a twinge like
its trying to tell me, its gonna come back. Anyone else here have the
VP shunt put in? And also, I've read stories on the net that said,
sometimes when going thru a store with those anti-theft alarms by the
door, that it can turn your shunt off.. is that true?

And one last thing to those that have had the shunt. Does your
stomach ever stop hurting from where they cut it at??

Thanks for everything.
Gina


 
Advanced
Add to My Yahoo!      XML What's This?

Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help